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Understanding Parental Monitoring of Children Genetically at Risk for T1D


An analysis of an ongoing study on children genetically at risk of type 1 diabetes examines the monitoring behaviors of parents.

New research from The Environmental Determinants of Diabetes in the Young (TEDDY) study indicates many parents view TEDDY participation as a way to monitor for type 1 diabetes (T1D), marking a benefit of enrollment in a longitudinal study that offers no prevention, the authors wrote. 

Results also show positive islet autoantibody (IA) notification increases short- and long-term monitoring behaviors, while for IA-negative and positive children, first-degree relative (FDR) parents engage in glucose monitoring, even when not instructed to do so.

TEDDY follows approximately 9000 children across the United States and Europe with high-risk human leucocyte antigen (HLA) DQ genotypes from birth to age 15 to determine environmental factors that may contribute to T1D development. Both children from the general population (GP) and those with an FDR with diabetes are included in the study. Although screening began in 2004, data on parental monitoring behaviors were collected annually, and the current analysis examines parental monitoring behaviors during the study’s first 7 years.

“While a number of studies have documented changes that individuals or their parents may undertake to prevent diabetes, fewer studies have examined behaviors to monitor for the occurrence of diabetes in those at genetic risk,” the researchers wrote. Little is also known about the characteristics of parents who engage in these behaviors or if their actions increase or alter responses to information about increased diabetes risk.

A total of 8676 HLA-eligible patients joined the study before 4.5 months of age, and as part of TEDDY, “families are asked to participate in clinic visits every 3 months during the first 4 years of the child's life and for every 6 months thereafter up to the age of 15 years or the diagnosis of T1D,” the authors wrote.

At each study visit, patients underwent IA testing, and based on results, risk information was relayed to parents. After 1 year, 7319 participants were still enrolled in TEDDY and patients were divided into 3 cohorts. Analyses revealed:

  • In IA-negative children, the most common monitoring behavior was participating in TEDDY study tasks; up to 49.8% and 44.2% of mothers and fathers, respectively, reported this.
  • Longitudinally, in IA-negative children, monitoring behaviors appear to remain relatively stable over time after an initial increase in children aged 6 to 15 months.
  • Among FDRs, 7% to 10% reported watching for diabetes symptoms and 7% to 9% reported monitoring the child's glucose, for mothers and fathers, respectively.
  • After IA-positive notification, all monitoring behaviors significantly increased in GP parents; only glucose monitoring increased in FDR parents, and these behaviors continued for up to 4 years.
  • FDR status, accurate diabetes risk perception, and anxiety were associated with glucose monitoring in IA-positive and IA-negative cohorts.
  • Up to 11% of FDR mothers and 8% of FDR fathers endorsed glucose monitoring, and the increased reporting in FDR compared with GP families was even more pronounced than what was observed for all monitoring behaviors.

Findings indicate that parents perceive TEDDY participation as a way to monitor for the onset of T1D—an accurate perception, as all children enrolled are more intensively monitored depending on IA-positive status and clinical signs of diabetes, the researchers said. Due in part to these monitoring strategies, children in TEDDY exhibit lower rates of diabetic ketoacidosis and less insulin requirements at diagnosis compared with those diagnosed in the community.

Results also show mothers consistently report more monitoring behavior than fathers and that monitoring was more common among older children, first-born children, nonethnic minority children, and FDR families.

“Parents who believe they can do something to prevent T1D likely view monitoring as a way to detect the condition earlier to prevent it, despite the fact that no empirically supported preventive interventions exist at this time,” the researchers wrote.

As monitoring data were self-reported by parents, it may be subject to reporting biases, marking a limitation to the study. The authors also did not have data about how often certain monitoring behaviors occurred and cautioned results may not be generalizable to the GP or FDR families not enrolled in TEDDY.

Overall, “findings suggest that parental monitoring is a complex behavior, differentially impacted by a variety of factors such as demographic and psychological constructs, as well as the level of T1D risk communicated to parents (ie, IA status),” the authors said. “A small but relevant group of parents engage in unnecessary glucose monitoring, despite not being instructed to do so and despite there being no extant literature suggesting that intermittent glucose monitoring may be helpful in predicting the development of T1D,” they added.

Additional education on watchful waiting strategies, or monitoring for symptoms, is warranted as this behavior was reported by relatively few parents in the current analysis and is an easy, noninvasive behavior that can be recommended to high-risk populations.

“Future work within TEDDY will examine monitoring behaviors vis-à-vis study participation to better understand how they may influence study satisfaction, protocol adherence, and study retention,” the researchers concluded.


Smith LB, Lynch KF, Driscoll KA, Johnson SB; the TEDDY Study Group. Parental monitoring for type 1 diabetes in genetically at-risk young children: the TEDDY study. Pediatr Diabetes. Published online March 11, 2021. doi:10.1111/pedi.13173

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